Thursday, October 28, 2010

But first, a little shameless self-promotion: I was recently interviewed for a radio piece on CCSVI that will be airing on National Public Radio this coming Monday, November 1, between 6 AM and 9 AM, during their Morning Edition program (click here to find the NPR station in your area). I have no idea how much of my interview they'll use, and wouldn't at all be surprised if only a few seconds of my voice is heard. Still, it was very flattering to be asked to participate, and it's also very encouraging that NPR is doing a segment on CCSVI, which has been largely ignored by the US media. For everyone who misses the live broadcast, the segment will be archived on the NPR website, and I'll post a link as soon as it's available.

And now, on with the show. I haven't written about CCSVI in quite some time, so the below post is very long, almost twice as long as any other piece I've ever posted. You might want to grab a cup of coffee and a couple of toothpicks to hold your eyelids open before attempting to plow your way through it…

The topic of the vascular theory of MS, which was initially hypothesized by Italian vascular surgeon Dr. Paolo Zamboni, and has come to be called CCSVI (Chronic Cerebrospinal Venous Insufficiency), continues to inflame the MS community among both patients and physicians alike (if you're unfamiliar with CCSVI, please click here). At times the debate over the validity of the CCSVI theory and the efficacy of the procedure used to address it (known as "The Liberation Procedure") has reached the level of hysteria on MS Internet forums, countless CCSVI Facebook sites, and in the print media, with outrageously hyperbolic statements pouring forth from both sides. The most fervent CCSVI advocates claim with absolute certainty that CCSVI is the cause of MS, and that the Liberation Procedure is a cure for the disease, while the theory's staunchest critics label it a hoax, and those physicians practicing the Liberation Procedure con artists selling desperate patients snake oil.

At this stage of the game, when very few scientifically valid trials have been conducted, both extreme viewpoints have absolutely no basis in fact, and these vehement arguments only confuse the issue all the more, creating adversarial tensions precisely when a spirit of open-mindedness and cooperation are desperately needed. Furthermore, these loudly voiced conflicting opinions can only work to the detriment of chronically ill patients vainly searching for answers that simply do not yet exist, adding clutter and confusion to an already complicated issue.

We are in an age of discovery in regards to CCSVI, and over the last several months much has been learned about the condition and the treatment protocols used to address it, though the picture remains far from clear. Many patients, understandably clamoring for easy access to the Liberation Procedure, argue that the procedure is nothing more than angioplasty, which is performed quite commonly on cardiac patients in hospitals around the world, and that they should be given access to the treatment for the simple reason that blocked veins need to be unblocked, regardless of whether or not a patient has MS. Both of these arguments seem quite valid at first glance, but don't really hold up to greater scrutiny.

Angioplasty is indeed a common procedure, and a very safe one at that. The Liberation Procedure, though, is not angioplasty, which is performed on arteries, but venoplasty, performed on veins, a procedure that is done much less commonly. This may seem like a minor discrepancy, but in fact presents some significant challenges to both the doctors performing the procedure and the technologies used during it.

In terms of anatomy, veins and arteries are very different creatures. The major arteries are quite rigid, designed to withstand the intense pressure of blood being pumped through them by the beating heart. Thus, when they are ballooned or stented open during angioplasty, they tend to stay open, given their natural rigidity. Veins, on the other hand, are thin-walled and flexible (just play with the ones on the back of your hand to see what I mean), presenting a very different target for the balloons or stents used during the Liberation Procedure. Virtually all of the equipment used during the Liberation Procedure was originally designed for utilization in arteries, and this has led to less than ideal efficacy when used in veins, as I will discuss in more detail a bit later. From a safety standpoint, as long as the procedure is confined to the use of balloons to open narrowed or blocked veins, the Liberation Procedure is quite safe.

As for the assertion that blocked veins need to be unblocked regardless of the overall health of the patient, this too is not as clear-cut as it first may seem. Since arteries are the primary culprits in cardiac disease and strokes, human venous anatomy has been very little studied by modern medicine. Incredible, but true. I've been told by several radiologists and vascular specialists (including those at the National Institutes of Health) that there truly is no definition of "normal" that can be used as a benchmark when assessing an individual patient’s venous system.

Indeed, initial studies have shown that up to 25% of healthy people appear to have the vascular blockages known as CCSVI, to no apparent ill effect (click here for info). Venous anatomy is redundant and adaptable, and it had been thought that blockages in veins are largely compensated for by this adaptability. Blood flow blocked in one vessel was assumed to be simply routed through another, or through new vessels grown by the body to make up for the blockage, called collaterals. Perhaps one fringe benefit of the investigation into CCSVI will be closer attention paid to venous anatomy on the whole.

It's important to keep in mind that Dr. Zamboni's theory involves not only blockages in veins, but more precisely, the reflux of deoxygenated blood back into the central nervous system caused by those blockages. Therefore, not all venous blockages meet the requirements of CCSVI.

My own case is a perfect example. A catheter venogram revealed that I have a significant blockage in my right internal jugular vein. Further testing indicated that this blockage is quite unusual, as it is not caused by an abnormality internal in the vein, as is the usual case, but rather by an external muscle pinching the vein significantly closed. The Interventional Radiologist who did my procedure reviewed my case with Dr. Zamboni, who is of the opinion that although my vein is clearly blocked, this blockage has not resulted in a turbulent backflow of blood, and therefore should not be treated. Not really what I wanted to hear, but facts is facts. I do plan on getting further testing to confirm Dr. Zamboni's opinion.

Earlier this month, one of the major international MS conferences took place in Sweden. Known as ECTRIMS (European Committee on Treatment and Research in Multiple Sclerosis), this year's conference featured many presentations on CCSVI, which in itself is something of a victory. During last year's conference nary a word about CCSVI was mentioned.

Much of the evidence presented at ECTRIMS was mixed, on the whole seemingly confirming a correlation between Multiple Sclerosis and the vascular abnormalities known as CCSVI, but also casting some doubt as to whether or not CCSVI is a cause, rather than an effect, of Multiple Sclerosis. Dr. Robert Zivadinov, who leads the team of researchers vigorously investigating CCSVI at the University of Buffalo, presented several very interesting papers. One paper demonstrated that the severity of CCSVI increases with the severity of Multiple Sclerosis symptoms experienced by patients, and with a more advanced disease course (click here for abstract). These findings were backed up by papers presented by researchers from Beirut (click here for abstract) and Italy (click here for abstract). If CCSVI were the cause of MS, the researchers would expect that a constant level of vascular abnormalities would be seen across the entire spectrum of disability levels and duration of disease among patients studied, which is not what their studies demonstrated. Other research presented at the conference contradicted these findings, such as a paper presented by Dr. Marian Simka, an Interventional Radiologist in Poland who has done hundreds of Liberation Procedures, which found that CCSVI plays a role in the cause and progression of MS, and that the vascular abnormalities were most likely congenital (click here for abstract).

Another study presented by Dr. Zivadinov found that subjects who presented with CCSVI had significantly more lesions and brain atrophy as measured by MRI than those MS patients without vascular abnormalities (click here for abstract). Yet another investigation presented by Dr. Zivadinov looked at the correlation between a gene implicated with MS, and CCSVI, and found that the data supported an association between MS disease progression and CCSVI separate from the suspect gene. The implications of these findings are that CCSVI could be a risk factor in developing the disease, or a result of the progression of MS (click here for abstract).

Clearly, the data presented at ECTRIMS was a mixed bag, which some CCSVI advocates found disappointing in that much of the evidence offered did not point to CCSVI being a direct cause of MS. Still, the studies did reveal a very strong correlation between vascular abnormalities and Multiple Sclerosis, which in itself is a giant step forward in convincing a dubious scientific community that these abnormalities do play a significant role in the puzzle that is MS. Much more research is needed to resolve the challenging questions posed by CCSVI, and such research is ongoing at the present time in multiple locations worldwide.

Some staunch CCSVI advocates have tried to dismiss research with findings not to their liking by claiming that the methodology used was faulty, or that the researchers themselves were tainted by their associations with pharmaceutical companies. As for the methodology used, it may be different than that originally used by Dr. Zamboni, and thus might in fact be invalid, but it does occur to me that the physical abnormalities found in CCSVI are not subtle in nature. We are talking about rather severe blockages in blood vessels, significant enough to cause blood to actually flow backwards through those vessels. It would seem that abnormalities of this magnitude should be detectable by more than one set of extremely specific methods of measurement. But, as I stated previously, venous anatomy has been little studied in the past, so perhaps the technological choices are indeed limited.

As for researchers whose integrity has been compromised by their ties to pharmaceutical companies, if all such physicians were prohibited from taking part in research studies, there would be practically no medical research conducted at all. A tragic truth about our current medical system is that almost every physician practicing in the United States has some affiliation with a pharmaceutical or medical device company. This phenomenon is not limited to neurologists, as some would make it seem, but is epidemic throughout the medical community. A wide range of doctors have affiliations with drug companies; orthopedic surgeons have relationships with the makers of artificial joints (click here for a fascinating New York Times article on this), cardiac surgeons are courted by the makers of replacement heart valves, and Interventional Radiologists have associations with the makers of the stents, catheters, and balloons with which they ply their trade. I've said it before, and I'll say it again, capitalism is a wonderful engine for driving an economy, but is absolutely corrosive when applied to the practice of medicine. When patients are viewed first as consumers of medical products and services, something is seriously wrong. I previously expounded on this disturbing topic in a previous post, "The Medical Industrial Complex: Sick People Required", which you can access by clicking here.

One of the big problems involved in the study of CCSVI in that none of the noninvasive imaging techniques used to try to detect venous abnormalities in patients before having them undergo an invasive catheter venogram are all that reliable. MRV imaging in particular has proven to be almost worthless, as yet another study conducted by Dr. Zivadinov and presented at ECTRIMS demonstrated (click here for abstract). Doppler Sonography, while more accurate, is only useful in detecting CCSVI when used according to very specific protocols, and conducted by a highly skilled operator. Even when such conditions are met, Sonography is somewhat subjective, as the Zamboni trained sonographer who did my Doppler scan has said. Sonograms can be interpreted differently by different physicians, and time after time both MRV and sonogram imaging done on patients have proven to be unreliable once a catheter venogram is performed. The blockages suggested by the noninvasive techniques simply don't correspond to what is actually found in patients when the catheter is inserted into their veins.

While the academic questions regarding CCSVI are all very interesting and fodder for great controversy, the biggest question for those of us suffering from Multiple Sclerosis is whether or not the Liberation Procedure can relieve our symptoms. If it turns out that the procedure is a cure, well, then MSers have hit the jackpot. If liberation "only" results in a dramatic drop-off in the misery caused by the disease, it's still a huge win, and will forever change the way MS is researched and treated. More importantly, hundreds of thousands of MS patients around the world will have a new and relatively straightforward conduit to relief.

Since no formal treatment studies have been conducted thus far (several are currently underway), we can only rely on the anecdotal accounts of patients who have undergone the Liberation Procedure when assessing its effectiveness. It's been estimated that over 2000 procedures have been performed in various locations around the world, but we've only heard from, at most, perhaps 100-150 of these patients. When assessing these accounts, which are usually quite encouraging, it's important to keep in mind that the preponderance of mostly positive reports related on Internet forums and YouTube videos are a product of the natural phenomenon of people who have positive outcomes to be much more inclined to make their results public than those with negative experiences. This isn't an attempt at subterfuge on anybody's part, but merely human nature. Reports from several clinicians doing the Liberation Procedure indicate that the success rate is less robust than might be inferred from Internet accounts. Still, some important trends can be identified in the anecdotal reports available.

It does appear that the Liberation Procedure does positively impact MS symptoms for a significant portion of the patients on whom it is performed. These positive results range from dramatic to slight, but another significant portion of patients, albeit a minority, report receiving no benefit from the procedure at all, some even telling of a worsening of their condition post procedure. We are also seeing the very troubling trend of restenosis (veins closing back up) several weeks or months after balloon venoplasty, and also an increasing amount of accounts of problems with stents implanted in patients' jugular veins, primarily in the form of stent thrombosis (clotting), and stented veins stenosing in areas above or below the location of stent implantation.

Although the accounts of restenosis are discouraging for the patients who experience it, their stories speak loudly to the validity of the CCSVI hypothesis and the effectiveness of the Liberation Procedure. Patients tell of experiencing marked improvements after having had the procedure, but then a dramatic worsening when their veins once again collapse. Upon a second attempt at liberation, most of these patients once again experience benefit. Unfortunately, many of these patients restenose yet again, accompanied by the return of their MS symptoms. This is a strong indication that resolving vascular blockages at the very least results in symptom improvement for a significant number of MS patients. However, with the incidence of restenosis far too common, strategies must be developed to address this vexing problem. Obviously, patients can't be expected to undergo repeated invasive procedures (which include a not insignificant dose of radiation) to address a continuing pattern of restenosis.

Stents have been used to treat veins that were resistant to ballooning or were otherwise problematic. The use of stents in the jugular veins has been somewhat controversial from the outset, as all of the available stents were designed for use in arteries, which generally carry a much more robust blood flow than veins, and which narrow in the direction of blood flow. This means that the risk of clotting in arterial stents is much less than in veins, and that any stent getting loose in an artery would only get pushed further into that artery, rather than have a clear path to the heart, which is the case for stents implanted in the jugulars.

As accounts of problems with stents increase, several doctors and clinics that perform the Liberation Procedure have shied away from using them. Since, once implanted, stents generally cannot be removed, the long-term failure rates of stents are also of considerable concern. The only other patient population that regularly receives venous stents are late stage renal patients, whose veins collapse as a result of kidney dialysis. Studies of the patency rates of stents placed in these patients are less than encouraging, finding failure rates as high as 50% after one year (click here for info). While the two patient populations in question are extremely different, the risk of stent failure in the long term is a legitimate concern, especially since the currently available stents were designed for use primarily in thoracic arteries, where they're not subject to the constant bending, twisting, and torque they experienced when placed in the very flexible human neck. Whether or not to allow the use of stents is among the many very difficult decisions patients considering liberation must make. I personally decided that I would not allow their use.

Obviously, large-scale treatment studies are desperately needed to determine not only the efficacy of the Liberation Procedure, but also the best methods and practices for performing it. Currently, the techniques used vary widely from doctor to doctor, with no real consensus among the treating physicians regarding the size of balloons to use during venoplasty, the use and placement of stents, or even what constitutes a treatable stenosis. Furthermore, many of the Interventional Radiologists performing the procedure have commented on the rather steep learning curve involved in getting it right.

Increasingly, it appears that the CCSVI picture is more complicated than originally thought, with more blood vessels (including the lumbar, iliac, and vertebral veins) likely involved. The Liberation Procedure is a work in progress, and procedures done a year from now will probably differ significantly from those done today. Physicians are still in the early learning stages in regards to the treatment of CCSVI, and patients should be wary of being a part of anybody's learning curve. The success rate of Interventional Radiologists who have done numerous procedures appears to be much greater than those with less experience. Again, the decision of what physician to choose needs to be given very careful consideration by patients considering liberation; not just any doctor offering the procedure will be adept in its performance. There is increasingly a "Wild West" environment developing out there, as the prospect of huge financial gains made by offering the Liberation Procedure becomes apparent to physicians worldwide, who might undertake the procedure without the proper training and requisite experience. This is a pitfall that patients need to be very aware of, and must be very careful to guard against. Ask any potential treating physician serious questions, request patient references, and do as much research as possible. Until the myriad questions regarding CCSVI and its treatment are fully resolved, there will be plenty of opportunities for hucksters to take advantage of desperate patients.

A burgeoning medical tourism industry has sprung up around CCSVI, with clinics offering the Liberation Procedure in such diverse locations as Poland, Bulgaria, India, and Costa Rica, for prices generally ranging from $10,000-$20,000. Because of the persistent problems with restenosis, stent thrombosis, physician competency, the necessity for post procedure medical care, and the constantly evolving knowledge base regarding the best standards and practices of the Liberation Procedure, I strongly urge patients to forgo traveling long distances for treatment.

In a best case scenario, in which a patient travels thousands of miles and spends heaps of money to be treated with balloon venoplasty, and finds themselves to be amongst those lucky enough to see significant benefit from the procedure, there is still the large risk (some place it at 50%) of restenosis some weeks or months post procedure. In such a case, the patient would be back to square one, less the large amounts of money they spent on travel and the procedure itself.

Furthermore, aftercare is very important, as patients are commonly placed on blood thinning drugs post procedure. These drugs need to be carefully monitored for months after treatment. If a stent is implanted, it may be quite difficult for patients experiencing complications to find appropriate treatment locally, with the possibility of dire consequences. Keep in mind, too, that there is no guarantee that any given patient will be among those who experience dramatic improvement. One prominent Interventional Radiologist that has performed well over 100 Liberation Procedures estimates that one third of his patients see no benefit from the procedure. Given those odds, combined with the high risk of restenosis and the very small but real chance of medical complications that might arise after liberation, traveling long distances and spending tens of thousands of dollars to pursue treatment cannot be recommended.

Of course, every patient must make decisions regarding CCSVI and the Liberation Procedure based on their own unique circumstances. For the majority of patients, I would strongly advise waiting 6 to 12 months before seeking liberation, as much more information from both academic and treatment research studies will be available, and some standardization and identification of best practices will be achieved in the coming months by the Interventional Radiologists performing the procedure.

It's very important, and very difficult, to make an unemotional and accurate assessment of your own condition and rate of progression. Karen likes to chide me about the fact that I've been saying that I'm six months away from being bedridden for the last three years. Presently, my right side is almost completely paralyzed, and my left side is weakening considerably. Not a good combination. I understand the desperation that all MS patients feel, regardless of the particulars of their state of disability. We all want to just be rid of this disease. But unless your situation is genuinely dire, it will absolutely be in your best interest to allow the science of CCSVI and the techniques that go into the Liberation Procedure to mature, as doctors gain experience and more hard facts about the condition become available. Most MS patients experience a relatively slow progression of disability. Waiting, especially in the face of the hype surrounding CCSVI, is extremely difficult, but in this case might save you considerable bodily wear and tear, significant sums of money, and much heartache. If your situation is genuinely dire, and your condition is rapidly declining to the point that your quality of life soon will be nonexistent, then all bets are off. Do what you feel needs to be done.

I firmly believe that CCSVI will prove to play a major part in the MS puzzle. Like all things related to MS, its impact will vary from patient to patient. For some patients, it may very well be THE answer to their problems, for others only a partial solution, and for others still it may play no role at all. MS is a very complex and frustrating disease, truly a scourge to those who suffer from it. CCSVI offers a light at the end of the tunnel, but there is still much work that needs to be done. Thankfully, dedicated researchers and physicians are actively looking for answers, even in the face of sometimes withering criticism, and their findings may very well result in paradigm shattering changes that rock the world of MS. But it is still very early in the game, and it's important to remember that discretion is often the better part of valor, and that the race does not always go to the swift.

Thursday, October 21, 2010

It's funny how sometimes snippets of conversation about a very specific topic can be insightful and enlightening on a much broader scale than originally intended.

It's currently major league baseball's playoff season, and the Texas Rangers are taking on the New York Yankees for the championship of the American League. Since I loathe the Yankees with every fiber of my being, and hold firmly to the belief that they are the physical manifestation of evil on Earth, I am fervently rooting for the Rangers to beat into bloody submission that fetid band of Satan's minions who sport pinstriped uniforms with a big NY stitched on them.

I make it a point to try not to hate, as hate is a poisonous emotion that does more damage to the person feeling it than to the person or thing at which it's directed. I make an exception for the Yankees. I hate them. I hate them. I hate them. May they all develop blistering pustules and suffer some hideously painful form of castration. Every Yankee win is a stab to my heart, and their every loss a fleeting confirmation that good can indeed conquer evil. This may sound crazy to some, but it's a feeling shared by most of the population of New England, and the minority of New Yorkers who call themselves Mets fans.

Ah, but I digress. What was I talking about? Oh, yeah, words uttered about one subject that can illuminate another. Anyway, the manager of the Texas Rangers is a man named Ron Washington, who before the season began was embroiled in a scandal about his use of cocaine, a substance to which he has an unnatural predilection. Apparently, he's been battling his substance abuse problem for years, and only managed to save his job by humbling himself, pleading his case before the team's owners, and agreeing to a strict program of oversight and counseling. So Ron Washington is a man who knows a little something about control, or, more precisely, the lack of it.

With his team leading Yankees three games to one in a best-of-seven series, Mr. Washington was asked at a press conference how he keeps his team calm and steady through the anxieties and emotions of such a highly charged series. Washington replied that his message to his players has remained the same throughout the season: that they must stay rooted in the moment, concentrate single-mindedly on controlling those elements of the game within their power, and accepting the circumstances over which they have very little influence. In baseball terms, this means catching the ball, throwing the ball, and running the bases to the best of your ability, each and every time. A player can't control what the other team does. If the opposing pitcher is especially effective on any given day, it may be extremely difficult to hit the ball with any authority. Still, by paying attention to the elements within their control, Washington's players have more often than not found themselves on the winning end even in difficult circumstances.

The basis of the wisdom that Mr. Washington imparted on his players applies not only to baseball, but to life itself, and is especially resonant to those of us suffering from chronic illness. The only person we have any real control over is ourselves; we have very little sway over the actions of others, or the circumstances that life doles out to us. Yet much time and suffering is spent trying to control elements that reside well outside our sphere of influence.

Despite what is often a lifetime of evidence proving the futility of such efforts, many folks make themselves miserable trying to control the actions of those around them. We chase unrequited love, attempting to will the person of our desires into having romantic feelings for us, an exercise that almost without fail ends in emotional disaster. We try to advance our careers or social standing by getting involved in petty games of politics, which can just as often lead to feelings of self degradation as it can to what usually amounts to some temporary form of satisfaction. We cajole, sweet talk, and bully, all in an effort to manipulate other sentient beings who have their own agendas and are likely trying just as hard to work us as we them. One thing I've learned through the years is that you never know what's going on in someone else's mind. Not that we shouldn't open our hearts and souls to others, as doing so is the only way to experience the majesty and grandeur of life, but we must be careful in choosing who we let in.

The only person we do have complete control over is ourselves. We can and should be the masters of our own thoughts, actions, and emotions. Unfortunately, for a variety of reasons, many people fastidiously avoid taking responsibility for their own happiness and success. Popular culture practically indoctrinates us into the belief that outside influences create inner satisfaction, and that our emotions have lives of their own. Quite frankly, this notion is nothing but a hurtful pile of horse crap. Emotions are complex things that arise from an intricate psychological web unique to each individual. Nevertheless, we create our emotions, we are not their creation.

Nothing irks me more than to hear people utter phrases like "I can't help the way I feel, I'm hardwired that way". Wrong. You can help the way you feel. It may take hard work, lots of practice, and extreme diligence, but if happiness and contentment are truly your goal, it's work that must be done. Letting others man the controls of your own happiness is akin to allowing yourself to be the passenger in a runaway car driven by somebody wearing an impenetrable suit of armor. The car will almost certainly crash, and the only one to suffer injury will be you.

When diagnosed with serious illness, we are confronted with an entirely different level of loss of control. Suddenly, we learn that our bodies have betrayed us, and that the enemy lies within. Despite whatever suspicions of illness we may have harbored, their confirmation is shocking. We are literally forced to separate mind and body, but this separation is often extremely difficult to achieve, especially as the body becomes less and less cooperative. As the meaning of the word "incurable" goes from abstract to concrete, we can arm ourselves for battle, and vow to fight her illness tooth and nail, but know in our hearts that the climb will be steep, and the conflict long.

We live in a body conscious, beauty obsessed culture. We look in the mirror and say,"that is me", not "that is my container". Yet, once serious and chronic illness strikes, we have no choice but to recognize that "me" is not the flesh and blood bag of bones staring back at us through the looking glass, but the spark contained within.

Ten years ago, I was happily swimming about a mile a day, an achievement that I took considerable satisfaction in, and one that was incorporated tightly with my sense of self. Now I can barely stumble 15 feet, and I'd probably need water wings to stay afloat in a pool. I took pride in my appearance, and derived considerable self-worth from my attractiveness to the opposite sex. Body and mind were tightly bound together, but my, how times have changed. Not that I am now some slovenly troglodyte, but if my self-worth were to be measured by physical prowess today, it could easily be paid for on a minimum wage salary.

Instead, the deterioration of my body has forced the evolution of my mind. When healthy, I paid lip service to the idea that happiness comes from within, and was indeed a choice, an aspect of life that in theory was under my control. Although cognizant of this notion, I was never able to live it. Too externally motivated, I all too often allowed myself to ride waves of emotion stirred up by the whims of others. I now understand the futility of such an approach, and as I've written before, can clearly see that happiness is not a single choice, but an infinite amount of choices made each and every day.

Illness has forced me to understand the concept of selective control, and to embody the reality that there is no way to direct the actions of others, the vicissitudes of life, or even the mechanisms of my own body. All that I can directly control is the essence of me; my thoughts, my emotions, and my reactions to the ever-changing world both outside and within. But that is enough. Releasing the external, embracing the internal, and taking it one moment at a time. Kindness to self leads to kindness to others, and then circles back again. Though being sick absolutely sucks, physical distress needn't consign you to a life of mental anguish. In the end, it's all up to you.

And also up to Ron Washington. At least for me. Because if the Texas Rangers don't knock off the New York Yankees, I will indeed know misery once again, and the forces of evil will run rampant through the land…

Saturday, October 16, 2010

Once again, I'd like to take the opportunity to thank everyone who has sent well wishes and messages of hope and healing. I am slowly "trending better" (in the words of my doctor) but still definitely feeling the effects of the truck that hit me. Hoping that the trend continues, and that someday very soon I'll be able to declare that I'm my good old bad old self.

In the meantime, I'm just going to try to gut my way through this, and resume as normal a schedule as my physical state will allow. I've got lots of catching up to do, both in terms of e-mails and private messages, and reading all of the MS and CCSVI related news that has accumulated over the past month. I'll pepper this blog with all items I find of interest, along with my usual commentary, for whatever that's worth. Seems that there's been a lot of CCSVI news both good and bad of late, and I'll try to make as quick a study of that as possible.

Anyway, I thought I'd share some of my experiences from the past four weeks. As during my hospital stay in July (click here for details), this last stint also included a rather colorful roommate. In July I was paired with an eccentric but very intelligent homeless person. This time around the man across the curtain was connected with a rather famous (at least here in New York) Irish mob called "The Westies" (click here for info).

The hospital I was in, Roosevelt Hospital, is on the fringes of the Manhattan neighborhood that has traditionally been called Hell's Kitchen. In these days of urban gentrification, there is an effort underway to re-label this neighborhood "Clinton", but the old name has stuck in everything but real estate brochures. As the moniker Hell's Kitchen implies, these were at one time pretty mean streets, controlled quite firmly by some lads of Irish descent not particularly averse to violence who came to be known as "The Westies". Though vestiges of the group still remain, by and large they've largely faded from view, and the neighborhood is now more the province of urban hipsters than old-school mobsters. When I first moved back to New York in 1999, I rented an apartment right in the heart of this neighborhood, on 49th St. between 9th and 10th Avenues.

My hospital roommate, Lenny, spoke in the kind of thick New York accent one rarely hears anymore, and sounded like one of the characters in the famous "Bowery Boys" movies of the 30s and 40s. He was probably in his late 50s, and had suffered a series of five strokes. The first night I was there, I overheard him telling an attending physician that he had survived quite a few traumas in his life, including a knifing to the chest and being thrown off the roof of a five-story building, and being no dummy, I put the accent and the stories together, and pretty much understood the kind of guy lying in the bed next to me. I figured I was in for an interesting few days.

Thing is, I tend to get along are quite well with guys like Lenny. I think it must be in my genes, as my great-grandfather and grandfather were both associated with the Jewish mob that thrived in the early decades of the 20th century, and came to be known as Murder, Inc. This was the group that spawned such characters as Meyer Lansky and BugsySiegel. Neither of my relatives were higher-ups in the organization, but suffice it to say that my grandfather didn't have a real job until he was 35 years old, when he married my grandmother, who was 17 years his junior. My grandmother pointedly assured me that my grandfather's associates were always perfect gentleman around her, and that she never saw my grandfather with a gun. She eventually forced him to quit the rackets, and he wound up working at a men's haberdashery, but family lore has it that he never quite went totally clean.

Whether for genetic reasons or not, I've generally gotten along very well with fellas who were "connected", and they've likewise usually taken a shine to me. Lenny was no exception. During the course of our conversations, which were not as lively as they might have been because of my raging fever and his sudden episodes of vomiting, I learned that almost all of Lenny's friends were either "dead, in jail, or in the witness protection program". I shared some stories about my ancestors, which he found highly entertaining, and he told me some details of his growing up in Hell's Kitchen, coincidentally on the same block that I moved to in 1999.

On my third night in the hospital, my fever was all the way up to 102°, the equivalent of nearly 104° for a person with a normal body temperature (my normal is about 97.2°). Lenny was suffering from a violent fit of vomiting, and though I continued pressing on the buzzer calling for a nurse, the medical staff was conspicuously absent. I took to shouting as loud as I could that somebody needed to get the fuck into my hospital room, because my roommate was in extreme distress. Finally, after about 10 min., some nurse’s aides came in to help Lenny out.

The next morning, Lenny thanked me for my actions the previous night, and told me that he would "never, never forget them". So, it seems that you all should probably try to remain on my good side, because I have a friend in Hell's Kitchen who could probably have someone bumped off for me for at a significantly discounted rate. I honestly wish Lenny the best, as he has several months of rehab from his strokes ahead of him, and the New York City that he represents is quickly disappearing, much to my overwhelming chagrin. I'd much rather share my city with folks like The Westies than with the criminals that populate Goldman Sachs and the rest of the Wall Street mobsters.

Since returning home, my convalescence has been nowhere near as exciting. I've been mostly confined to bed, and have spent my time watching innumerable documentaries on the chilling evil of the Nazis, searches for mythical beasts, and UFOs, three of my favorite subjects. Unfortunately, being stuck in bed leaves the mind much time to wander, and despite my usual efforts at mental discipline, my thoughts have often found themselves venturing into some very dark places. What would my life have been like without MS? Where would my career have led me? Although already moderately successful, my professional life was primed for launching to much greater heights had it not been cut short by this fracking disease. Who exactly was I now, this half paralyzed creature rendered dependent on others for basic daily needs? And what horrors does the future hold, should my disease remain on its current trajectory?

Frederick Nietzsche wrote, "Battle not with monsters, lest ye become a monster, and if you gaze into the abyss, the abyss gazes also into you." Indeed, at times during the past month, I've veered dangerously close to that abyss, and along with the physical tests of this latest illness, it's mental challenges have been almost equally profound. During the course of my MS, my mental state has often been in lockstep with my physical condition. At times when I'm feeling relatively well, Zen detachment becomes a goal much easier to achieve than when my body's progressive failings make themselves glaringly apparent. These past four weeks have found me at my physically weakest, battling an incredibly persistent fever, and without my usual activities and outlets for mental distraction, my thought processes have wandered into areas I rarely let them go.

I miss the old me. I miss being able to wake up, get showered, dressed, and out of the house in 45 minutes. These days it sometimes takes me 45 minutes to get out of bed. I miss regular social outings with friends, free from worries of wheelchair friendliness and urinary urgency. I want to be able to simply meet a few buddies in a divey bar and slowly, sloppily, and happily get totally bombed. My form of teetotaling MS has put an end to my drinking anything more than half a glass of wine, and that only on rare occasions. As much as I adore my wife, and as completely monogamous a man as I am, I miss the utterly harmless daily flirtations and sexual tensions of my old social interactions. MS and disability have made me into something of a neuter. Women don't flirt with guys in wheelchairs. I miss the furtive glances and hidden smiles, even though I would never act on them. Most of all, I guess, I miss the sense that the future was full of endless possibilities, and the magical thinking of the constant drive forward.

Make no mistake, I'm immensely proud and consistently astonished at the success that Wheelchair Kamikaze has found, and the fact that my silly little blog has enabled me to reach out through the ether and impact the lives of many, just as they have impacted my own. Perhaps there can be no greater success than helping others even as you help yourself, and I'm tremendously grateful to have been given this opportunity, but it's all been so unexpected. The impact that I always dreamed of making has come with a giant asterisk attached, and at an almost inconceivable cost. The emotional payoff of creating the blog has been beyond words, and I shudder to think what my life would be like without it. Hopefully, my rants and ruminations will continue to resonate with my fellow travelers down the road of MS, but, God, if only we could all just go back to being our healthy old selves, perhaps with a bit of the wisdom forced on us by MS thrown into the mix.

Okay, enough wallowing. No sense leaving an open invitation to the abyss, and really, there's so much left to live for. Like the "Ancient Aliens" documentary that I have recorded on our DVR, and the reams of CCSVI info I need to review.

Saturday, October 9, 2010

Hey folks, I'm finally feeling well enough to make a post, although I think it'll be a quick one, since my stamina still leaves much to be desired. Three weeks after being hit with this somewhat mysterious illness, I'm still running a low-grade fever, and my energy levels are quite low.

First and foremost, I'd like to deeply thank all of the wonderful people who have sent healing messages and well wishes via e-mail or comments on this blog. Although I'm not usually at a loss for words, I truly cannot express how deeply your expressions of concern are appreciated. When I started this blog a little over a year and a half ago, I never in my wildest dreams imagined it would attain the popularity that it has, and I'd like to thank each and every reader for your input and support through good times and bad. Although I have not been able to spend any time on the computer, I have been able to read e-mails on my phone, so your messages have gotten through, each one a drop of sunshine in an otherwise miserable experience. Unfortunately, I've not been able to respond to these e-mails because I rely on voice recognition software to "write" my responses, but as soon as I'm feeling up to it I plan on answering each e-mail individually. Please be patient, though, as my reduced energy levels and the sheer volume of e-mails that need responses will make this a slow process.

In a nutshell, three weeks ago today I was hit with a fever of unknown origin. Though both my blood and spinal fluid have been cultured for infections, none has shown up. Despite this, my illness has seemed to respond favorably to antibiotics, which further deepens the questions surrounding it.

I spent five days in the hospital, and yes, much like my last visit to the hospital in July, I did again have a very colorful roommate, who I'll write about in a future post. While in the hospital, my fever spiked to 102°, which is quite high given that my normal body temperature is about 97.2°. Needless to say this was scary, but large doses of ibuprofen managed to get the fever under control. As all of you with MS are aware, fever sends MS symptoms into overdrive, making such episodes all the more frightening. Worse yet, the nursing care at the hospital was in a word deplorable, as the ward I was in was understaffed, and the staff that was in place was simply overwhelmed by the volume of patients they needed to attend to. Still, the constant struggle trying to get nursing attention for both my roommate and I did nothing to alleviate my intense discomfort, and was frankly enraging.

All the more frustrating is the fact that the hospital I was in, Roosevelt Hospital in Manhattan, has a "VIP" floor (click here for details) on which patients have beautifully appointed rooms, individualized nursing care, gourmet meals, extra accommodations for family to stay with them, and even afternoon tea service. Naturally, all this comes at a steep price, starting at $400 per night for a "standard" room, above and beyond the regular exorbitant hospital fees. Of course, no insurance plan will cover such expenses, so these elite services are the province of the very rich, of whom there are plenty in NYC, who can afford to pay such prices out-of-pocket. Since my pain management doctor has his offices on the opposite end of that same floor, I've seen some of these facilities firsthand, including the beautiful dark hardwood floors (as opposed to the institutional tiles in the rest of the hospital) and the uniformed concierge ever vigilant at his desk. Yes, here in New York City, often called the capital of the world, the very rich get extraordinary care in the same hospital in which regular folks can't get a god-damned nurse or nurse's aide to give them their medication on time or to help out a roommate who is violently throwing up. So much for the myth of a just society…

Okay, that's it for now. Before I blow a gasket, it's back to bed for me. I promise to fill in the details in the coming days, not all of which are quite so dreary. Even in the most troublesome days there are reasons to laugh, and concentrating on just taking it one day at a time, along with the constant acknowledgment that we are all just bit players in a huge theater of the absurd, goes a long way in making things bearable. As Nietzsche said, that which does not kill us makes us stronger, but as a friend of mine responded, that which does not kill us can make us pretty damn sick.

My deep thanks again to all of you who have reached out in support, and a special shout out to my wife Karen, my mom, and the rest of my family, who have gone above and beyond the call of duty in caring for an ailing kamikaze…

Friday, October 1, 2010

Unfortunately, this is still Karen reporting on behalf of Marc. Marc's fever is down after he started a course of Cipro (antibiotic). Since nothing is ever simple with Marc, the Cipro is giving him very uncomfortable side effects, mostly causing a racing heartbeat and making him feel very woozy. Overall, he's feeling better since the fever is down, and he's supposed to speak to his doctor tomorrow about switching antibiotics.

Testing has shown that it isn't the use of Methotrexate that made Marc sick. It could be a reaction to the spinal tap, but for now is being classified as a fever of unknown origin, just like in July. Although the doctors don't see a link, Marc and I think its very unusual to have two such episodes so close together. There was no Methotrexate in July and Marc has previously done at least 5 other treatments with the drug with no negative side effects.

Marc is worried that he has the disease that turns people into zombies and he has made me promise to shoot him in the head if he suddenly leaps out of bed intent on eating my brain. Since we don't have a gun, he is also instructing me to apply for the license NY requires to get one. He suggests contacting a relative outside NY to acquire one on the QT. One of us is related to a former mobster (fodder for a future blog post).

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...